"We relied on the Vascular Birthmarks Foundation to provide us with the information, the contacts, the resources, and the support that we needed to get through this difficult time. Their theme, "We are making a difference" couldn't be more accurate. For us, it was all the difference in the world."
Jill Brown

Hi Linda
Just a note to say how wonderful I found the interview of you and Capital 9 news. Thanks so much for your devotion.
Gina

Ask the Adult Rep in Spanish

Warning message

I
was born in Cuba on June 14, 1950. I took more than a month before my
father and mother noticed the big red mark I had on my left ear and
scalp.

Suddenly the great happiness of having their first child turned into
worry and sorrow. I had been born with a malformation they did not know
what it really was. My mother cried every night in the bathroom hiding
from my father. She was totally devastated.When my dad found out and
told my mother it was a birthmark that is was a benign tumor and that
at the moment science did not know how to treat it , just had to be
left alone and that eventually it will go away. Years went by and it
did not go away, it grew and changed color. My father, as a doctor,
consulted every dermatologist, and every pediatrician he could reach
in Cuba and Spain, and they all told him the same; ‘Watch and
See’ for my dad this meant NO HOPE!I became an overprotected child
by my father, when we went to the beach, he put a hat on my head and
I had to stay under a palm tree. I could only get into the water early
in the morning or late in the afternoon when the sun was milder. I watched
my friends play in the water and shed many tears, many times. I guess
that is the reason why I now hate the beach.As a young child and teenager
I refused to comb my hair up in a ponytail because everybody stared
at me and asked, with a terrible pitiful tone, if I had been burned
or hurt, sometimes they asked too many questions that made me cry and
even hate the world!
My dad combed my hair in a ponytail and forced me to face the situation,
responding to those questions that it was a birthmark, that it was given
by God so I would not get confused if lost with another similar girl
with the same name and looks. I believed him and for many years to come
I responded in the same manner. Now is different, the years and the
cruel attitude of people made me tougher and indifferent to their curious
questions about this red and bulky stain I was born with and which I
hated with all my soul. I prayed for years and made promises and Novena
and so God will make it go away. My dad in a way became my hairstylist,
he had to approve of the ribbons, rubber bands or anything that I used
on my hair, no direct sun to hit me, I had to wear a hat, etc.

As I grew up and my permanent teeth were coming out I bled during the
night and many nights I woke up to a bed soaked with blood, because
I had some of this malformation on my gums. When I bled, I was taken
to the doctor and they ran lab. tests for internal bleeding but they
all came back negative. Doctors, including my Dad, could not believe
the great amount of blood it usually came out of my ‘Hemangioma’.In
1961 when I was 11 years old and my brother seven we were sent alone
to the United States with the Catholic Church to escape Communism. We
came without our parents, the group was known as "PETER PAN"
My father was a physician, a Pediatrician and my mother a Pharmacist
and a Registered Nurse.

They could not leave Cuba at the time for political reasons, they were
opposed to the New Revolution’s lack of freedom and declared atheism
also Castro did not let any professional in the Medical field to leave
the island either, so we really believed we will never see our parents
again. They were desperate not only because we were away in a strange
land but mainly because of my Birthmark condition.We were taken care
by Dr. Novak and his wife of Alexander City, Alabama while our parents
were trapped and trying to escape the island. We did not speak any English.
It was truly traumatic. We were being temporarily adopted by a really
rich, caring and good-hearted family that I could not tell them of my
ear and scalp and the bleeding, because they spoke no Spanish and we
Spoke No English. A nightmare! My brother cried all the time. I did
too when he felt asleep. The more I cried the more the 'Hemangioma'
on my scalp and ear became deep red, and dilated, it became very hot
with fast pulsations. I thought it was going to explode and I will bleed
to death.Through my life I have suffered episodes of bleeding, but this
time not of the birthmark on the ear and scalp, but of my throat and
gums, that is when we found out the birthmark extended to the right
side of the throat and left side of the gums in the back.
In 1971 I was a student at the University of Puerto Rico, and while
on a study trip of Modern Art to New York City, blood came out of my
throat I had to return to San Juan, because I was bleeding so much it
became a hemorrhage. The doctors in Puerto Rico did not know what to
do. The ENT doctor, my dad and the Emergency room doctor were amazed
at the great amount of blood coming out of my throat. The cans stop
the bleeding with a coagulant injection direct to my throat, something
the Doctor has never done before.

By this time I was a traumatized young woman with is a terrible feeling
of being alive with the uncertainty that next day I could be soaked
in blood and dead, before my time.
I learned how to live fast and passionately, The AVM ruled my life,
deep down inside I was always sad and anxious, as waiting for something
bad to happen at any moment, not knowing where to go, whom to talk to
or what to do. It was a desperate feeling of impotence and frustration.

In 1981 I had my only son, he was 9 pounds 15 ounces, a really big
baby for me. He had to be born by C-section. The last month of my pregnancy
I had terrible pain in my throat. Nothing helped me. The doctors did
not know why. Ten months later, I started to bleed from the right side
of my throat, the blood came out with a lot of strength and it was constant.
As I had to swallow all that blood, my stomach became very upset, I
felt like I was having or rocks inside, I coughed and the bleeding became
worse. I lost 26 pounds in three weeks, I cried every day, I did not
have the energy to open my eyes, I thought I will die.
I started to pray and pray, and one morning I had the impulse to open
the Phone Directory
Under Ear, Nose and Throat doctors for the University of Miami School
of Medicine there I found listed an ENT Professor Dr. Antonio Jose Maniglia.
I went to see him. He treated me with Lasers. He was successful and
the bleeding stopped.

In 1995 the AVM on my left ear started to grow, it bled sometimes. I
started to see every six months Dr. Goodwin at the University of Miami,
and ENT oncologist, Chief Doctor of the University Sylvester Center,
he said nothing could be done, just watch and see. The growing continued
and by 2005 it bled so much again I lost my mattress and pillows. I
began to worry a lot. I felt miserable.

One afternoon in 2005 I was reading ‘SELECCIONES’ that is
READERS DIGEST in Spanish and found out about Dr. Waner and his miraculous
surgeries on Hemangiomas and AVMS, I started to look for him on the
Internet and found the VASCULAR BIRTHMARK FOUNDATION. Immediately I
sent Dr. Gregory Levitin an Email
With some pictures of my ear and scalp. Days later he mailed back telling
me. S I did not have a HEMANGIOMA that
It was an ARTERIOVENOUS MALFORMATION. Wow! was I confused, he explained
that they were related but they had different treatments and that I
needed a plan. His words finally gave me hope.
On June 26th. 2006 I arrived in New York City with an MRI and my heart
full of joy and sorrow at the same time, it was a difficult feeling
to express, I wanted to tell the Dr. Waner and Dr. Levitin before they
said anything, if they could help me or not, how much I have suffered,
how my father died in 1991 with the immense worry of not being able
to help me find a cure, of how this Birthmark had ruled my life and
how much it had affected me emotionally, socially and spiritually. They
told me they could help me, that they could remove the AVM with minimal
risk. I felt I was given back the opportunity to be born again normally
this time, a last chance, a final solution to all my life worries. I
will never forget Dr. Waner and Dr. Levitin faces, their smile, their
support, specially from Dr. Levitin, since then, I guess I am bonded
to them for life. On November 14, 2006, I went to surgery at Roosevelt
Hospital with a unique team of doctors, it was difficult for me and
for them too, but I went with faith in God and in all of them, they
knew I trusted them 100%.
First Dr. Waner told me he will not open my scalp, that he will only
remove my ear growth but a different story was when in the surgery room
they saw that my arteries where so dilated that they had to open my
scalp and fix them. if I was to live longer, my heart could not tolerate
for many years the big effort to pump all the blood in the condition
my arteries were.
I became a challenge at that point, entubation was also another delicate
problem, since I had an Experimental repaired done with lasers to my
airways in 1983 nothing could disturb it because there was a high risk
that my throat could bleed again. Seven days later I was on a plane
back to Miami.
Well I made it, the doctors made it, I am now cured !
My heart is full of gratitude to all the doctors, nurses, and Dr. Waner’s
office staff for all their love, their caring, their patience and tolerance
with me and my condition.

My eyes fill with tears when I remember Esma, Cheryl, Sonya, Dr. Alejandro
Berenstein, Dr. Waner and most of all Dr. Gregory Levitin. I am compromised
because of them, because of what they did for me, because of my life
suffering. I need to give something back of what God and they gave me
and the best way is to help others have hope, and strength to find a
cure to fight back any obstacle; because it is the only way to finally
be FREE!

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Mission Statement: An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment, provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance for individuals with birthmarks.

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